One day I was healthy…until I wasn’t. Eighteen years old was a pretty fresh age to have a doctor look you in the face and say, “It’s terminal, and you maybe have two years to live.” Twenty four is a pretty fresh age also to have a central line jammed into your chest (permanently) only to be bonded to a machine that pumps 24/7 medication into your system. When your life literally depends on a pump, medication, pharmacies, hospitals, and now a government that see’s “pre-existing conditions” (AKA –  YOU!) as a financial loss, your mind just kind of drifts off into a wasteland…where your life is being thrown.

My life doesn’t matter to our government. Its true. I’m allowed to say that. I have put my hand over my heart for years singing the national anthem, pledges in school, or wearing flag printed bullshit on the fourth of July having it jammed into my head that I need to be grateful where I live. “The land of the free” they say.  When I feel the tug of the tube that sticks out above my right breast, or glance down at the literal piles of medical bills that I owe for a shitty body I didn’t ask for (and quite frankly can’t afford) I feel not a bit of freedom. When I scroll through my trending topics and see that our “leaders” of America call people like me a “burned down house” (Senator Pat Toomey) and that basically our life is already over, or people like Joe Walsh tweeting back to Jimmy Kimmel that he doesn’t feel obligated to pay anyone else’s healthcare needs. This is the country I live in. These are how the leaders of this country feel about “my kind.”

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So, here I stand somewhere in the middle alongside a country of haters who believe that because I am terminally ill my life is not as important (it’s just expensive) and others who call me insensitive and stupid for not wanting to accept a lung and heart transplant. I mean really people, who has the money for that? Our “leaders” do, but enough about those sorry excuse for humans. I have done everything I can to live my life (despite my diagnosis) and strive to have a productive time while I’m here. I have taught school, mentored kids, wrote and educated about my disease, lived my life in the mountains, and finally this year opened my boutique. Yet all of my efforts, my dreams, my fantasies, my aspirations i look to are thrown into a category of “burned down house.”

I have spent seven years since my diagnosis fighting for my life, whether that be through pills, oxygen therapy, surgeries, hundreds and hundreds of doctor office visits, and now IV therapy. I have spent seven years, mentally, trying to convince myself that my life is worth saving, and that maybe despite my failing lungs and heart that life is possibly beautiful. I feel defeated to look onto our nations people and learn that my life is indeed too expensive to save. That’s America right now. Land of the Free, for an exceptional few.

-haley.

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Terminal, Terrified, and Traumatized.

Reactive is the exact word to describe my current self; a volcanic emotional eruption after years of collision, change, pressure, politics, and overall what gradually morphs into traumatic stress. Many would define the results after a life changing — or life threatening event, but what had I experienced? Just a “bad” diagnosis and a few pills honestly. Until almost six years later when I felt comparably to unraveling like a cheap sweater, and finally diagnosed with severe Post Traumatic Stress Disorder.

Only eighteen at the time of my Pulmonary Hypertension diagnosis, I did not fully comprehend what would happen to not only my body, but my entire existence. In those beginning phases I showed up to a vastly overwhelming amount of appointments, collected pills, listened to results, and attempted to force myself into continuing a life that at the time felt right for me. I believed that I would do what everyone else was doing; find a career, get married, have kids, and just endure within the definition of normal. I took the “your disease is terminal, you can’t have kids, your life will forever change” and shoved it to a deep dark corner titled denial. In it’s place I painted a brave portrait of a “strong, happy, chronically ill human” to obliterate my reality’s truth. I received quite a bit of compliments on doing so too utterly convincing my conscious and others that I was truly happy, and most of all okay.

I don’t even know how it happened, or when it happened. It was a daily transition into this anger, grief, and outraged person that I harvested a special hatred for. Deeply I felt compelled and pulled to be another individual who others, including myself, did not understand. Unpredictability, obsessed, overwhelming sad compiled with anger — Why was this happening? Despair and outrage will bring you to your knees only to find a crevice of that darkened place that only you thought erasable. The truth is unpalatable, alienating, and disturbing. Underneath it’s crushing embrace I collapsed into this final form of who I had no choice in becoming — I just am.

In simplest of terms, I am being held hostage by my own brain to be kept inside a “reactive mode” because I am experiencing anxiety related to a past traumatic event. The diagnosis of a terminal disease is traumatic. The paranoia of keeping my central line in tact as well as my pump, and mixing my medication is traumatic. The constant hospital stays, checkups, surgeries, and mandatory IV’s are traumatic. Healthcare coverage being a constant threat in America is traumatic. “Will I die from my disease, or without treatment?”

Wrapping your mind around the fact that you will have your organs replaced is indescribable — and just when you think you have escaped these continuous phrases of “you will have a normal life” — the line that doctors rely on for relaxation, you see Facebook updates of people having babies right next to your twenty-year old friend who succumbed to her fight with this disease. Just when you thought you could continue on with your Saturday morning cup of coffee you receive the news that the grant organization, Caring Voices Coalition, is no longer covering any expenses for your medication for 2018. How will you cover your $60,000 a month co pays?

Your perception of reality is a fight for survival which is vastly too intense for others, especially when reaction is what you are currently wired to produce in result of these perceived, and very evident threats. While I am currently seeking help so that I can improve my well being, I have broken down and transformed. I will never be the same because the skin which holds my body together has new tubes, scares, and shed repeatedly. It is okay to change amidst your survival.

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I wish in this country we completely understood the toll of a disease on someone, and that the consequences bleed into all parts of our life: it is not contained to a hospital room. Someone who is chronically ill becomes limited not only by the failing body they are trapped in, but employment, relationships, insurance, housing and mentally — disease can envelope you. Chronically ill people are so anxious about current day America and their future that while taking care of these defeated organs we ignore the health and well being of one our most important; the brain. Why would a country of plenty make the checkups and healthcare of an important member such a challenge? Well, quite frankly, our lives are too expensive and non existent to begin with. What did you call us Senator Pat Toomey? Burned down houses I do believe?

While the intentions and thoughts behind caring about a chronically ill person are pure and vibrating from what we think could be a good place, we have to be willing and prepared to fully encompass the mental obscurity that will plague this human. It is an exhausting exchange of interactions in which patients are losing their sure footing among this journey. Their entire way of thinking, reactions, and beliefs are developing and brewing among damaged cells, treatments, therapies, and IV fluids.

I didn’t withstand a war around me, but instead within my own body. Developing trust issues against my own being and country takes up my free time, and flashbacks to moments in surgery or ICU that I would love to avoid forever. I live in terror because I know they are coming back with vengeance, generous strange organs, rib saws, and a high chance of death in the form of treatment…or lack thereof.

-haley.

This morning I broke out in a cold sweat while trying to “bargain” with my body. Finally, a jolt ran through my body springing me from the bed and barely made it to the bathroom in time to once again see the contents of my stomach infront of me. It’s become the new norm every morning for almost a month now as I slowly increase my therapy.

I never knew that one day I would wake up sick, and be sick the rest of my life. I had the “new diganosis denail” for a long time, and even had running shoes picked out for the day when I would finally be normal. However, very slowly overtime the side effects from medication kicked in. The managing of all the appointments, and trips to see specialists kicked in. A tube was placed in my chest while medication is pumped through it 24/7…and that’s kicking in.